January 29, 2025 • 31 mins
Imagine a world where cerebral palsy is not a barrier but a stepping stone to personal growth and empowerment. Join us on an inspiring journey as Kevin and Pommy Henry share their transformative experiences living with spinal cell viral ataxia and shine a spotlight on the remarkable Alexis Johnson. With dreams of becoming a zookeeper and a passion for nursing, Alexis defies limitations through her dedication to adaptive martial arts. Her story of resilience and determination is a testament to the power of perseverance and the strength of the human spirit.
Dive into the world of personal growth through martial arts and the unexpected joy found in cross-country running. Kevin and Pommy explore how these physical pursuits become more than just a challenge—they're a therapeutic escape and a source of camaraderie. Discover how mastering techniques like the jump front kick or pushing through a tough race reveals inner strengths and builds a strong competitive spirit. Through personal anecdotes, they illustrate how overcoming obstacles leads to self-improvement, resilience, and a positive mindset that impacts all aspects of life.
Our heartfelt conversation with Alexis and her martial arts instructor, Master Alan Williams, uncovers the empowering role of adaptive martial arts. Alan's insights into his teaching approach highlight Alexis's incredible achievements in Taekwondo, showcasing how tailored instruction can unlock potential in individuals with disabilities. As we broaden our focus to include the deaf community, we invite listeners to explore diverse perspectives and support networks. Don't miss out on more enriching stories and resources by checking out our companion YouTube channel, Making the Lemonade.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:04):
hi everybody, it's kevin.
Uh, this is a classic episodefrom last season.
Enjoy and don't forget to likeus and and subscribe, thank you,
welcome to our podcast withLife Digital.
(00:33):
I'm Kevin Henry and my partnerin crime and life is Pommy Henry
.
I have a rare disease known asspinal cell viral ataxia, which
is a neuromuscular disease.
This has left me with mobilitychallenges, with a speech
(00:57):
impediment and noise-inducedanxiety.
Speaker 3 (01:02):
Living with these disabilities for over 20 years,
we have developed helpful hintsand life lessons that we would
like to share with you.
That has made our life easierand possible in some cases.
We consider ourselvesdisability advocates and intend
to educate ourselves and youabout other disabilities and
(01:24):
issues, and also talk aboutthings we find interesting and
frequently encounter when we'reout and about.
Speaker 1 (01:32):
And today we're going to talk a little bit about
cerebral palsy.
Speaker 3 (01:38):
So their plan was that we're going to take a
disability and really do a deepdive into it so we understand it
and can share what we know withyou.
We also a few of these.
We have friends that have thesedisabilities, and so we will be
using some interviews with themto discuss their point of view
(02:00):
and how they handle thedisability.
Speaker 1 (02:03):
Those interviews are coming up in a minute, but we're
going to talk for a minuteabout cerebral palsy, kind of
give you some background on thedisorder etc.
Speaker 3 (02:17):
Cerebral palsy is a group of disabilities that
affects a person's ability tomove and maintain balance and
posture.
It is caused by damage orabnormalities in the brain,
usually before, after or duringchildbirth or early childhood.
Cerebral palsy can havedifferent types of symptoms
(02:38):
depending on what part of thebrain was affected, but some
common symptoms are stiff orfloppy muscles, uncontrolled or
slow movements, difficultywalking, speaking, swallowing
and eating, problems with vision, hearing and seizures, learning
disabilities and intellectualimpairments.
(03:00):
There is no current cure forcerebral palsy, but there is
quite a few treatments for thiscondition, including medicine,
therapies, surgeries andassisted devices.
We asked how common this was,and it happens in 2 to 2.5 per
(03:22):
1,000 live births.
Why did we pick cerebral palsyfirst?
Speaker 1 (03:27):
Kevin Well it used to be a lot more common in earlier
days, when medicine wasn't asfar advanced as it is now.
Now it's more than likelycaused by either a drug
interaction or an accident thatoccurs shortly after birth.
Speaker 3 (03:50):
I think we talked about this when we were talking
about President.
Speaker 1 (03:54):
Franklin Roosevelt.
Speaker 3 (03:56):
Oh, I'm Franklin Roosevelt.
Speaker 1 (03:58):
Yeah, we talked about this during the FDR episode too
.
I believe it was.
Speaker 3 (04:05):
As it was a possible.
Maybe he had this instead ofthe, Instead of the polio,
that's one of the possibilities,yeah.
Speaker 1 (04:14):
So what we're going to do is we're going to have two
interviews.
The first is a talk with ayoung lady named Alexis Johnson
who is a part of my martial artsclass at Adelaide Mussel Kwan,
(04:35):
and then we're going tointerview Master Alan Williams,
who runs the Adelaide School.
Speaker 3 (04:44):
That you attended and helped with your therapy.
Yeah, and we met Alexis whenshe was about six years old.
How did that all come about?
Speaker 1 (04:54):
Well, actually it all started with a demonstration
that Master Williams performedat her school.
Pastor Williams performed ather school, and in that he uses
people from the disabled class,such as myself and shows how
he's adapted the martial artstechniques to things they can do
(05:21):
instead of focusing on whatthey cannot do.
Alexis was really interested init and spoke with him to get
the details and took the time totalk to her parents, and that
information is covered duringyour interview as well.
(05:46):
She was spunky, oh yeah, andthat is also quite apparent when
you get to listen to her talk.
She's very self-confident.
Speaker 3 (05:58):
And she is now about 20 years old.
Speaker 1 (06:01):
Yeah, she's actually enrolled in college and studying
nursing, so enjoy theinterviews.
I wanted to ask you a fewthings about cerebral palsy, and
you just referred to it as CP.
Is that like a common thingthat I can get away with when
(06:26):
talking to people with cerebralpalsy?
Speaker 2 (06:30):
Yeah, when you get into talking to people about it,
you definitely hear theabbreviation CP, because
cerebral palsy is pronounceddifferent ways.
It's pronounced cerebral palsy,cerebral palsy, it's just a
different pronunciation.
So the easier way to do it isjust do CP.
Most people with CP will knowwhat you are talking about.
Speaker 1 (07:11):
Okay.
Speaker 2 (07:11):
Part of the information that we put out is
helpful to, for example, friendsand family your support group,
if you will.
Did they get CP as well?
That translates to cerebralpalsy.
Yeah, it just depends on thekind of support group you have
and how in depth of the researchthat they tend to do with it.
For my mom and me, it was justalways called cerebral palsy.
It wasn't until a couple ofyears later, when I started
doing my own research, that Ilearned that people call it CP.
It just kind of depends on whatgroup you're with and how in
depth they want to go about it,because there are different
(07:33):
severity levels to the cerebralpalsy.
Speaker 1 (07:37):
Okay, one thing just popped into my mind that I read
somewhere.
Is it true, every case ofcerebral palsy is a little bit
different?
Speaker 2 (07:49):
Yeah, every case is different because there are
different severity levels.
There's low to mild, to severe,where low it kind of just
affects them.
Mild is where you can visiblysee that it affects them, and
severe is not only visible butyou can also hear it, because
they're kind of laid back in awheelchair and they don't really
(08:09):
.
They don't have anything tomove, they vocalize, they can't
form physical words.
Speaker 1 (08:15):
Right, right, okay.
I first met you at the OuterLimits Muscle Quan martial arts
courses.
How did you come to learn aboutMaster Williams and his
(08:35):
programs for handicapped people?
Speaker 2 (08:38):
Master Williams first stopped by our school, oak
Ridge High School, in 2009, theyear after he opened his first
building, and he was doing ademonstration as part of, like,
october, fiscal NationalDisability Awareness Month,
because there's like a week inOctober where it's Disability
Awareness Month and he was doingdifferent programs on it and he
(09:00):
was showing that hey, and hebrought a few of his students
with him to show us like, hey,these guys have this, but
they're doing it too.
So you know, it was like allright, why not?
Went home, talked to mom anddad about it and we gave it a
shot, because the only thing Iwas going to get from it was a
benefit Not only just from going, but it was going to help with
(09:22):
the muscles and being able tostretch and I was able to make
friends who I now considerfamily.
Then I mean, miss Janneywatched me from my hip surgery
and she'd help me crawl alongthe backside of the mat to just
up and getting walking againafter the hip surgery.
Speaker 1 (09:38):
Right, okay, how did progressing in martial arts help
you?
Speaker 2 (09:49):
It definitely challenged me, like cause there
were certain and it's also likea challenge to myself with that,
because there are certainthings that I see other kids do
that like oh hey, I want to kickthis higher.
Oh hey, I want to do this, and Ihad to find a way to figure out
how to do that.
But they were also there to helpme do that as well, like if it
was a goal or something that Iwanted to do, like, hey, I want
(10:10):
to be able to kick higher withmy right leg.
He would give me theinstruction sitting there how to
do it like the jump front kick.
I couldn't get as high as theother kids and you know that's
just something that I had towork with, and so one of the
ways that I learned how to do ajump front kick was actually by
sir Paul, who sat there andtaught me hop with one foot and
(10:30):
kind of do it like a bunny hop,you know, like you're jumping
and kick one leg higher than theother and see how high you
could go.
But also part of that is youhave to stretch.
You've got to sit there, you'vegot to stretch, you've got to
loosen those muscles, because ifthey're tight, you're not going
to be able to get where youwant to get to go and how you
want to do it.
Speaker 1 (10:52):
Yeah right, been there done that to do it.
Yeah right, been there, donethat.
Speaker 2 (11:02):
uh, okay, when you talk about working with sir paul
and we talked a little bitabout martial arts, but in
general would you say you're acompetitive person I am very
competitive, like if I get achallenge thrown out in front of
me and somebody tells me oh hey, you're not going to be able to
do that.
One, I'm going to find a way todo it.
Two, I'm going to do it.
(11:22):
And then, three, I'm going toshow you that I can do it, just
so I can prove you wrong.
Because I might.
And this is what I always tellpeople is, I might be just a
little bit different, but that'snot going to try and stop me
from doing what you can do orwhat anybody else can do.
Speaker 1 (11:40):
Well, I'm glad to hear that attitude.
Speaker 2 (11:43):
I am very determined.
Speaker 1 (11:47):
Because of the way I talk, people assume they don't
know me, assume I'm mentallychallenged in some way.
No, I just have problemstalking the part of my brain
that says this is how you talkis not working correctly so.
Speaker 2 (12:11):
Right.
And everybody's got a little.
I'm sure everybody's got alittle bit of something that you
know something's not workingright or something doesn't work
right, but some of us have.
Everybody does, some of us haveit a little bit more than
others.
Speaker 1 (12:26):
Correct.
Speaker 2 (12:26):
It makes it a blessing not a curse.
Speaker 1 (12:30):
Did you know?
I don't know if you knew thisor not, but mastrogams cannot
fully extend its left arm.
Speaker 2 (12:40):
Yep, I knew that one.
Speaker 1 (12:43):
Okay.
Speaker 2 (12:45):
I forget how he told that story, but he's told that
story before.
Speaker 1 (12:49):
Yeah, it doesn't sound like a pleasant experience
, but he's you know, I had thatmindset from his own perspective
of okay, I have to learn it theright way, but I can't do this.
You know, I can get it done,but it won't look correct.
Speaker 2 (13:14):
It's all about changing it, so it works for you
.
Speaker 1 (13:18):
Exactly.
Speaker 2 (13:19):
There's always some way to modify it.
There's always some way to makeit work for you that other
people don't think about.
But as long as it gets the sameend goal, it doesn't really
matter how you got there Exactly.
Speaker 1 (13:31):
Does it really matter how you got there Exactly Now?
One thing I wanted to ask youabout was towards the end of
where I talked to you last.
You were still in high schooland you decided to run cross
country.
(13:56):
Now the question I have is why.
I mean, just obviously youprobably saw that as a challenge
or something to do your way,but I never enjoyed
cross-country, and to approachcross-country with an even more
(14:17):
severe handicap, I just couldn'tput myself through that cross
country was one of those thingswhere you know, they brought it
up in seventh grade and to me Ihad no idea what cross country
meant.
Speaker 2 (14:33):
When I thought of cross country I thought, oh,
we're just running.
Yeah, okay, wrong, scratch thatprocess thought uh, you sit
there in the meeting and they'retelling us surprise hey, it's
junior high, we're gonna berunning on the highway, we're
gonna be running on the gravel,we're gonna be running hills,
we're gonna be running on roughterrain, you know, and they're
(14:55):
sitting there and they'reexplaining all this to me in
seventh grade and I'm going ohcool, this sounds like fun, this
is where I can get outside,this is where I can play.
And I got to.
You know, my friends and I gotto talking about it, which was
really kind of cool, and one ofthe kids in seventh grade looked
at me and said are you going todo it?
I said I don't know.
I'm going to go talk to my momBecause there were concerns with
(15:19):
that of me running and falling.
You know, running on the highway, me falling, or you know, and
it was something because youknow, the way my neurologist had
explained the stamina portionof cross country to me was when
(15:41):
normal people and their musclesget tired, they stair, step down
.
It's one little thing at a timego from top peak performance
down to nothing in a matter ofminutes to, in this case,
minutes, because you know,running a 5k took me 33 minutes
to do.
But right, starting to runcross country, it turned into
(16:06):
something I was curious about.
And then the competitive partof me kicked in, especially
after some girl told me wewouldn't ever go to state as a
freshman team because I'm a slowrunner.
And I was like, okay, well,let's see how this works here,
because that freshman year Imade seventh man after being
told I wasn't gonna make 10thseventh man until my 10th grade
(16:29):
or junior year.
Well, he put a challenge out,the coach put a challenge out, I
took it and I ran with it andcross country wasn't.
You know, hey, junior high was amile and a half.
A mile and a half is easy workFor some junior high kids and
for some others not so much.
But a mile and a half wasnothing compared to the 5Ks that
(16:52):
I ran for four years straightBecause in order to get in shape
for the races and just all overfor cross country, if you're
running a mile and a half asjunior high practice, you're
running three or four miles Forhigh school.
If you're running three miles,the girls were running anywhere
(17:14):
from four to six miles and theboys were running six to eight
miles Double the length of whatthey had to do because then
three miles would be easier andit would also build up your
endurance and your staminaeasier and it would also build
up your endurance and yourstamina.
Running cross country was alsolike another thing of therapy to
(17:35):
me.
I was outside, I could just letloose.
It was a stress reliever for mebecause I could just run and I
could go, didn't have to worryabout school, didn't have to
worry about studying, didn'thave to worry about my grades.
I didn't have to worry about mygrades.
I didn't have to worry aboutanything.
I just had to run.
It was something easy to takemy mind off of.
Speaker 1 (17:53):
That's one thing that didn't change from when I was
in high school yeah, you run alot more than you need to for
the race, to get ready for therace.
Speaker 2 (18:06):
Not to mention the warm-up that went with it before
practice.
Speaker 1 (18:10):
Yeah, the coach would say, hey, go out and run a mile
or two to warm up.
I'm like, uh, do I?
Speaker 2 (18:22):
have to.
You want me to do that beforewe actually run.
Speaker 1 (18:26):
Yeah.
Speaker 2 (18:28):
Oh, our workouts were .
He would always do ab workoutsand those would just kill me
before I even started running.
So by the time we were in themiddle of our workout, everybody
else had already just likestarted to break a sweat and
then when they'd actually run,they'd full-on blow and break a
sweat.
I was already dripping in sweatby the time we got to the ab
workouts because I was doingtwice the amount of work for my
(18:51):
muscles that everybody else wasputting in, like they were still
getting loose and everything,and my muscles were already like
I'm done, I want to go.
I'm like too bad.
Speaker 1 (19:01):
Yeah, You're trying to convince them to play along
and they weren't having it.
Speaker 2 (19:09):
Yeah, and that's when you just, you know, for me me
at least that's when I would putmusic in if I had it with me
that day, if I had it on myphone or whatever, and I would
just run because I could stillhear the traffic and I would run
.
Or, you know, when I didn'thave it all right cool, find a
piece of scenery out there thatI wanted to get to, that's my
checkpoint, that's where I wouldrun to, that's where I'd be
(19:31):
like, okay, hey, you get to here, you could walk.
But then me being me, I waslike, okay, actually, let's go a
little bit further past that,let's do this, let's get to here
.
And I kind of did that inpractice a couple of times and
like within the first month,coach sire was like behind me
because she would run with us,the coaches would run with us,
(19:52):
her son would be leading, theboys, the girls would just take
off on their own and I was inthe back half and coach would
just be behind me.
She was kind of like my littlerunning buddy for the first
couple of weeks, because I wouldstart out behind her and then I
would catch her and then I'dget past her and then I would
just keep going.
And then one practice I'llnever forget I hadn't stopped
running, and usually by the timewe get to the top of this hill
(20:15):
there at the four-way in oakridge, I would have to walk
because my legs would already bedead.
And I just kept turning acorner and hit the downhill and
got halfway down and all I hearis coach then keep going,
johnson.
I'm like I'm doing something,apparently.
Speaker 1 (20:34):
Okay, we're going to change gears a little bit.
If you were to have any job inthe world now bear in mind I
know you're a lot younger thanme, mind, I know you're a lot
younger than me, so money maynot necessarily play into it to
(20:55):
begin with what job would youlike to have?
I?
Speaker 2 (20:59):
don't know If I could do anything in the world, it
would probably be a zookeeper,because I like the big cats, I
like the exotic animals.
Speaker 1 (21:14):
That's kind of a good answer.
Speaker 2 (21:17):
That's something I could see myself doing.
Speaker 1 (21:21):
Yeah, I could see you doing that too.
Speaker 2 (21:28):
I'd just pick up about every stray cat or dog I
see anyway.
So if I got to work at a zoo,I'm sure I'd lose my mind.
I'm sure I'd be like thatlittle kid in kindergarten on
the first day, like ooh, look atthis.
Speaker 1 (21:43):
Okay, Alexis, how many dogs or cats do you own?
Speaker 2 (21:48):
Right now I own two dogs and three cats, and that
sums that
Speaker 1 (21:56):
up.
Okay, last question If you werelike omnipotent for like a
nanosecond, what would you wishfor If it were all up to you?
Speaker 2 (22:14):
Oh, I don't just stick me in an ocean somewhere,
just literally drop me off on abeach somewhere and leave me.
I would be good.
Speaker 1 (22:40):
Oh yeah, but obviously your time is not young
if you're in one of thoseprograms.
So okay, alexis, thank you verymuch.
Speaker 2 (22:52):
If I could be stuck on a beach?
Yeah, I would be stuck on abeach.
Speaker 1 (23:02):
I'm here today with Alan Williams from Outer Limits
Musulman.
Alan, why don't you take aminute to tell everybody about
your school?
Speaker 4 (23:14):
Sure, kevin.
Thank you Again.
As Kevin just iterated here, Iam a 6th Don Black Belt in
Taekwondo, a 5th Don Black Beltin Hapkido, now a Master
Instructor in Kali from thePhilippines and then also a
first brown in Judo.
Speaker 1 (23:34):
Pretty impressive.
Do you call a student you haveby the name of Alexis Johnson?
Speaker 4 (23:41):
Oh yes, of course Alexis is a memory we'll never
forget.
Speaker 1 (23:44):
She's a sweetheart and quality student forget she's
a sweetheart and qualitystudent.
Just uh say for a minute, saysomething about alexis and how
she fit into your educationalsystem alexis.
Speaker 4 (23:58):
uh, I was had the opportunity to meet after doing
a demonstration at her highschool.
Alexis at the time was only sixyears old and, ironically, now
I guess I've known her forapproximately 17 years give or
take, and Alexis begun with ussome time ago in Taekwondo and I
believe since that time hadreached her first or second dawn
(24:21):
in Taekwondo.
Speaker 1 (24:23):
Cool.
I just spoke with her the otherday Apparently family's doing
well, her family's doing well,she's doing well, everything is
good in her life and she'sactually going to school
studying nursing.
Speaker 4 (24:41):
I heard about that.
She is a workaholic besides herformer martial arts basis.
Alexis doesn't seem to slowdown and nothing seems to stop
her.
Speaker 1 (24:53):
That's true.
A few years ago, the last timeI talked to her she was in high
school and running cross country.
I was like, okay, why I had toask her why she just, you know,
thought she started out doing itin middle school, thought it
(25:15):
sounded like something, you know, she'd get outside have fun,
play with the other kids.
She didn't realize how muchwork was involved.
But when she got into it shefigured out what she had to do
and did it.
Speaker 4 (25:31):
So pretty amazing, kevin.
What she told me is how she,even if she ended up in last
place, she never stopped herdrive and the potential she
pushed was amazing because,because of your time, you worked
as a physical therapy assistant.
Speaker 1 (25:51):
Is that correct?
That was correct.
Did you know other patientswith cerebral palsy?
Speaker 4 (25:57):
Several, because I practiced for over 26 years.
So, yes, I was very acquaintedwith them.
Speaker 1 (26:04):
So how does Alexis compare to those other patients?
Speaker 4 (26:10):
To be honest, I've only seen one other patient per
se that tried to push themselveswith such an illness.
I personally can't imagine I'venever gone through something
such as these ladies have gonethrough.
But Alexis has just fought andeven though you can visibly see
some of that effect on her life,you don't see her stopping.
(26:33):
I can't imagine some of thepain she goes through or some of
the limitations she may havegone through, but I've never
seen her stop trying or pushingthrough to obtain her goals.
Well said, alexis certainly hasa personality that she is going
to do whatever needs to be doneprogram that I feel like we aim
(27:12):
to reach any individual withthat opportunity to take their
skills and help them to do whatthey can do.
But Alexis was self-driven.
Although she came to us with aneed, she took that need and
she's the one that progressedand drove herself.
Speaker 1 (27:22):
Now take a minute and address.
If a potential student wants toget in touch with you, or an
instructor, say, from anotherpart of the country, wants to
consult with you and find outhow to approach the situation
(27:44):
with a certain disability youhave experience with, how would
they get in touch with you?
What is the best way?
Speaker 4 (27:53):
Sure, obviously they're welcome to go to our
Outer Limits Martial ArtsFacebook just to kind of follow
us and see the pictures and seethe information.
But for a direct conversation Ireally encourage them to call
me directly.
My home number, or my cellnumber, as it were, is
573-579-5036.
(28:16):
They are welcome to email me orFacebook me, but I can reach
them more quickly and morereadily by calling me on my
phone or texting me.
Speaker 1 (28:25):
Okay.
Is there anything else you'dlike to say about Alexis or
about your school?
Speaker 4 (28:31):
As far as Alexis, I just continue to encourage her,
look forward to the next thingthat she's going to do.
I watch the things on societyand the world for her to show up
for that next thing, much likeyou have, Kevin, and very proud
of you and your accomplishments.
Much like you have, Kevin, andvery proud of you and your
accomplishments.
Speaker 1 (28:49):
Well, thank you.
Thank you for being with us andlook forward to talking to you
again.
Speaker 3 (29:04):
My pleasure Boy.
I really enjoyed that, Kevin, Ienjoyed listening to those
interviews.
Speaker 1 (29:10):
So our next episode is going to be about deafness.
Before we get a lot of peoplestating the obvious yes, we
realize that deaf people couldnot hear a podcast.
So this is more to educateeverybody else about deafness
(29:32):
and the deaf community,including their support groups,
which often include friends orfamily, so they can either point
out things they've learned thatthey're to the deaf community,
or perhaps give us some feedbackgive us some feedback on some
(30:00):
of our misconceptions or thingsthat we failed to point out okay
see you next time.
All right, bye.
Oh, just in case anybody needsto get a hold of us, they can do
that through our website, whichis wwwwhenlifegivesyoulemonsnet
(30:28):
.
All one word.
Yeah, I don't think you cantype it any other way.
Your browser will freak out.
Speaker 3 (30:41):
Bye now.
We are always looking toimprove the podcast, so if you
want to hear a specific topic,have a differencing opinion,
want to add something to theconversation, drop us an email.
(31:01):
Our contact information islisted on our website.
It'swwwwhenlifegivesyoulemonsnet.
We have recently added acompanion YouTube channel called
Making the Lemonade.
If you enjoy the podcast,continue your enjoyment by
joining us on YouTubeSoundstripe.
Soundstripe.
Speaker 1 (31:40):
Soundstripe, soundstripe.
Thank you,
hi everybody, it's kevin.
Uh, this is a classic episodefrom last season.
Enjoy and don't forget to likeus and and subscribe, thank you,
welcome to our podcast withLife Digital.
(00:33):
I'm Kevin Henry and my partnerin crime and life is Pommy Henry
.
I have a rare disease known asspinal cell viral ataxia, which
is a neuromuscular disease.
This has left me with mobilitychallenges, with a speech
(00:57):
impediment and noise-inducedanxiety.
Speaker 3 (01:02):
Living with these disabilities for over 20 years,
we have developed helpful hintsand life lessons that we would
like to share with you.
That has made our life easierand possible in some cases.
We consider ourselvesdisability advocates and intend
to educate ourselves and youabout other disabilities and
(01:24):
issues, and also talk aboutthings we find interesting and
frequently encounter when we'reout and about.
Speaker 1 (01:32):
And today we're going to talk a little bit about
cerebral palsy.
Speaker 3 (01:38):
So their plan was that we're going to take a
disability and really do a deepdive into it so we understand it
and can share what we know withyou.
We also a few of these.
We have friends that have thesedisabilities, and so we will be
using some interviews with themto discuss their point of view
(02:00):
and how they handle thedisability.
Speaker 1 (02:03):
Those interviews are coming up in a minute, but we're
going to talk for a minuteabout cerebral palsy, kind of
give you some background on thedisorder etc.
Speaker 3 (02:17):
Cerebral palsy is a group of disabilities that
affects a person's ability tomove and maintain balance and
posture.
It is caused by damage orabnormalities in the brain,
usually before, after or duringchildbirth or early childhood.
Cerebral palsy can havedifferent types of symptoms
(02:38):
depending on what part of thebrain was affected, but some
common symptoms are stiff orfloppy muscles, uncontrolled or
slow movements, difficultywalking, speaking, swallowing
and eating, problems with vision, hearing and seizures, learning
disabilities and intellectualimpairments.
(03:00):
There is no current cure forcerebral palsy, but there is
quite a few treatments for thiscondition, including medicine,
therapies, surgeries andassisted devices.
We asked how common this was,and it happens in 2 to 2.5 per
(03:22):
1,000 live births.
Why did we pick cerebral palsyfirst?
Speaker 1 (03:27):
Kevin Well it used to be a lot more common in earlier
days, when medicine wasn't asfar advanced as it is now.
Now it's more than likelycaused by either a drug
interaction or an accident thatoccurs shortly after birth.
Speaker 3 (03:50):
I think we talked about this when we were talking
about President.
Speaker 1 (03:54):
Franklin Roosevelt.
Speaker 3 (03:56):
Oh, I'm Franklin Roosevelt.
Speaker 1 (03:58):
Yeah, we talked about this during the FDR episode too
.
I believe it was.
Speaker 3 (04:05):
As it was a possible.
Maybe he had this instead ofthe, Instead of the polio,
that's one of the possibilities,yeah.
Speaker 1 (04:14):
So what we're going to do is we're going to have two
interviews.
The first is a talk with ayoung lady named Alexis Johnson
who is a part of my martial artsclass at Adelaide Mussel Kwan,
(04:35):
and then we're going tointerview Master Alan Williams,
who runs the Adelaide School.
Speaker 3 (04:44):
That you attended and helped with your therapy.
Yeah, and we met Alexis whenshe was about six years old.
How did that all come about?
Speaker 1 (04:54):
Well, actually it all started with a demonstration
that Master Williams performedat her school.
Pastor Williams performed ather school, and in that he uses
people from the disabled class,such as myself and shows how
he's adapted the martial artstechniques to things they can do
(05:21):
instead of focusing on whatthey cannot do.
Alexis was really interested init and spoke with him to get
the details and took the time totalk to her parents, and that
information is covered duringyour interview as well.
(05:46):
She was spunky, oh yeah, andthat is also quite apparent when
you get to listen to her talk.
She's very self-confident.
Speaker 3 (05:58):
And she is now about 20 years old.
Speaker 1 (06:01):
Yeah, she's actually enrolled in college and studying
nursing, so enjoy theinterviews.
I wanted to ask you a fewthings about cerebral palsy, and
you just referred to it as CP.
Is that like a common thingthat I can get away with when
(06:26):
talking to people with cerebralpalsy?
Speaker 2 (06:30):
Yeah, when you get into talking to people about it,
you definitely hear theabbreviation CP, because
cerebral palsy is pronounceddifferent ways.
It's pronounced cerebral palsy,cerebral palsy, it's just a
different pronunciation.
So the easier way to do it isjust do CP.
Most people with CP will knowwhat you are talking about.
Speaker 1 (07:11):
Okay.
Speaker 2 (07:11):
Part of the information that we put out is
helpful to, for example, friendsand family your support group,
if you will.
Did they get CP as well?
That translates to cerebralpalsy.
Yeah, it just depends on thekind of support group you have
and how in depth of the researchthat they tend to do with it.
For my mom and me, it was justalways called cerebral palsy.
It wasn't until a couple ofyears later, when I started
doing my own research, that Ilearned that people call it CP.
It just kind of depends on whatgroup you're with and how in
depth they want to go about it,because there are different
(07:33):
severity levels to the cerebralpalsy.
Speaker 1 (07:37):
Okay, one thing just popped into my mind that I read
somewhere.
Is it true, every case ofcerebral palsy is a little bit
different?
Speaker 2 (07:49):
Yeah, every case is different because there are
different severity levels.
There's low to mild, to severe,where low it kind of just
affects them.
Mild is where you can visiblysee that it affects them, and
severe is not only visible butyou can also hear it, because
they're kind of laid back in awheelchair and they don't really
(08:09):
.
They don't have anything tomove, they vocalize, they can't
form physical words.
Speaker 1 (08:15):
Right, right, okay.
I first met you at the OuterLimits Muscle Quan martial arts
courses.
How did you come to learn aboutMaster Williams and his
(08:35):
programs for handicapped people?
Speaker 2 (08:38):
Master Williams first stopped by our school, oak
Ridge High School, in 2009, theyear after he opened his first
building, and he was doing ademonstration as part of, like,
october, fiscal NationalDisability Awareness Month,
because there's like a week inOctober where it's Disability
Awareness Month and he was doingdifferent programs on it and he
(09:00):
was showing that hey, and hebrought a few of his students
with him to show us like, hey,these guys have this, but
they're doing it too.
So you know, it was like allright, why not?
Went home, talked to mom anddad about it and we gave it a
shot, because the only thing Iwas going to get from it was a
benefit Not only just from going, but it was going to help with
(09:22):
the muscles and being able tostretch and I was able to make
friends who I now considerfamily.
Then I mean, miss Janneywatched me from my hip surgery
and she'd help me crawl alongthe backside of the mat to just
up and getting walking againafter the hip surgery.
Speaker 1 (09:38):
Right, okay, how did progressing in martial arts help
you?
Speaker 2 (09:49):
It definitely challenged me, like cause there
were certain and it's also likea challenge to myself with that,
because there are certainthings that I see other kids do
that like oh hey, I want to kickthis higher.
Oh hey, I want to do this, and Ihad to find a way to figure out
how to do that.
But they were also there to helpme do that as well, like if it
was a goal or something that Iwanted to do, like, hey, I want
(10:10):
to be able to kick higher withmy right leg.
He would give me theinstruction sitting there how to
do it like the jump front kick.
I couldn't get as high as theother kids and you know that's
just something that I had towork with, and so one of the
ways that I learned how to do ajump front kick was actually by
sir Paul, who sat there andtaught me hop with one foot and
(10:30):
kind of do it like a bunny hop,you know, like you're jumping
and kick one leg higher than theother and see how high you
could go.
But also part of that is youhave to stretch.
You've got to sit there, you'vegot to stretch, you've got to
loosen those muscles, because ifthey're tight, you're not going
to be able to get where youwant to get to go and how you
want to do it.
Speaker 1 (10:52):
Yeah right, been there done that to do it.
Yeah right, been there, donethat.
Speaker 2 (11:02):
uh, okay, when you talk about working with sir paul
and we talked a little bitabout martial arts, but in
general would you say you're acompetitive person I am very
competitive, like if I get achallenge thrown out in front of
me and somebody tells me oh hey, you're not going to be able to
do that.
One, I'm going to find a way todo it.
Two, I'm going to do it.
(11:22):
And then, three, I'm going toshow you that I can do it, just
so I can prove you wrong.
Because I might.
And this is what I always tellpeople is, I might be just a
little bit different, but that'snot going to try and stop me
from doing what you can do orwhat anybody else can do.
Speaker 1 (11:40):
Well, I'm glad to hear that attitude.
Speaker 2 (11:43):
I am very determined.
Speaker 1 (11:47):
Because of the way I talk, people assume they don't
know me, assume I'm mentallychallenged in some way.
No, I just have problemstalking the part of my brain
that says this is how you talkis not working correctly so.
Speaker 2 (12:11):
Right.
And everybody's got a little.
I'm sure everybody's got alittle bit of something that you
know something's not workingright or something doesn't work
right, but some of us have.
Everybody does, some of us haveit a little bit more than
others.
Speaker 1 (12:26):
Correct.
Speaker 2 (12:26):
It makes it a blessing not a curse.
Speaker 1 (12:30):
Did you know?
I don't know if you knew thisor not, but mastrogams cannot
fully extend its left arm.
Speaker 2 (12:40):
Yep, I knew that one.
Speaker 1 (12:43):
Okay.
Speaker 2 (12:45):
I forget how he told that story, but he's told that
story before.
Speaker 1 (12:49):
Yeah, it doesn't sound like a pleasant experience
, but he's you know, I had thatmindset from his own perspective
of okay, I have to learn it theright way, but I can't do this.
You know, I can get it done,but it won't look correct.
Speaker 2 (13:14):
It's all about changing it, so it works for you
.
Speaker 1 (13:18):
Exactly.
Speaker 2 (13:19):
There's always some way to modify it.
There's always some way to makeit work for you that other
people don't think about.
But as long as it gets the sameend goal, it doesn't really
matter how you got there Exactly.
Speaker 1 (13:31):
Does it really matter how you got there Exactly Now?
One thing I wanted to ask youabout was towards the end of
where I talked to you last.
You were still in high schooland you decided to run cross
country.
(13:56):
Now the question I have is why.
I mean, just obviously youprobably saw that as a challenge
or something to do your way,but I never enjoyed
cross-country, and to approachcross-country with an even more
(14:17):
severe handicap, I just couldn'tput myself through that cross
country was one of those thingswhere you know, they brought it
up in seventh grade and to me Ihad no idea what cross country
meant.
Speaker 2 (14:33):
When I thought of cross country I thought, oh,
we're just running.
Yeah, okay, wrong, scratch thatprocess thought uh, you sit
there in the meeting and they'retelling us surprise hey, it's
junior high, we're gonna berunning on the highway, we're
gonna be running on the gravel,we're gonna be running hills,
we're gonna be running on roughterrain, you know, and they're
(14:55):
sitting there and they'reexplaining all this to me in
seventh grade and I'm going ohcool, this sounds like fun, this
is where I can get outside,this is where I can play.
And I got to.
You know, my friends and I gotto talking about it, which was
really kind of cool, and one ofthe kids in seventh grade looked
at me and said are you going todo it?
I said I don't know.
I'm going to go talk to my momBecause there were concerns with
(15:19):
that of me running and falling.
You know, running on the highway, me falling, or you know, and
it was something because youknow, the way my neurologist had
explained the stamina portionof cross country to me was when
(15:41):
normal people and their musclesget tired, they stair, step down
.
It's one little thing at a timego from top peak performance
down to nothing in a matter ofminutes to, in this case,
minutes, because you know,running a 5k took me 33 minutes
to do.
But right, starting to runcross country, it turned into
(16:06):
something I was curious about.
And then the competitive partof me kicked in, especially
after some girl told me wewouldn't ever go to state as a
freshman team because I'm a slowrunner.
And I was like, okay, well,let's see how this works here,
because that freshman year Imade seventh man after being
told I wasn't gonna make 10thseventh man until my 10th grade
(16:29):
or junior year.
Well, he put a challenge out,the coach put a challenge out, I
took it and I ran with it andcross country wasn't.
You know, hey, junior high was amile and a half.
A mile and a half is easy workFor some junior high kids and
for some others not so much.
But a mile and a half wasnothing compared to the 5Ks that
(16:52):
I ran for four years straightBecause in order to get in shape
for the races and just all overfor cross country, if you're
running a mile and a half asjunior high practice, you're
running three or four miles Forhigh school.
If you're running three miles,the girls were running anywhere
(17:14):
from four to six miles and theboys were running six to eight
miles Double the length of whatthey had to do because then
three miles would be easier andit would also build up your
endurance and your staminaeasier and it would also build
up your endurance and yourstamina.
Running cross country was alsolike another thing of therapy to
(17:35):
me.
I was outside, I could just letloose.
It was a stress reliever for mebecause I could just run and I
could go, didn't have to worryabout school, didn't have to
worry about studying, didn'thave to worry about my grades.
I didn't have to worry about mygrades.
I didn't have to worry aboutanything.
I just had to run.
It was something easy to takemy mind off of.
Speaker 1 (17:53):
That's one thing that didn't change from when I was
in high school yeah, you run alot more than you need to for
the race, to get ready for therace.
Speaker 2 (18:06):
Not to mention the warm-up that went with it before
practice.
Speaker 1 (18:10):
Yeah, the coach would say, hey, go out and run a mile
or two to warm up.
I'm like, uh, do I?
Speaker 2 (18:22):
have to.
You want me to do that beforewe actually run.
Speaker 1 (18:26):
Yeah.
Speaker 2 (18:28):
Oh, our workouts were .
He would always do ab workoutsand those would just kill me
before I even started running.
So by the time we were in themiddle of our workout, everybody
else had already just likestarted to break a sweat and
then when they'd actually run,they'd full-on blow and break a
sweat.
I was already dripping in sweatby the time we got to the ab
workouts because I was doingtwice the amount of work for my
(18:51):
muscles that everybody else wasputting in, like they were still
getting loose and everything,and my muscles were already like
I'm done, I want to go.
I'm like too bad.
Speaker 1 (19:01):
Yeah, You're trying to convince them to play along
and they weren't having it.
Speaker 2 (19:09):
Yeah, and that's when you just, you know, for me me
at least that's when I would putmusic in if I had it with me
that day, if I had it on myphone or whatever, and I would
just run because I could stillhear the traffic and I would run
.
Or, you know, when I didn'thave it all right cool, find a
piece of scenery out there thatI wanted to get to, that's my
checkpoint, that's where I wouldrun to, that's where I'd be
(19:31):
like, okay, hey, you get to here, you could walk.
But then me being me, I waslike, okay, actually, let's go a
little bit further past that,let's do this, let's get to here
.
And I kind of did that inpractice a couple of times and
like within the first month,coach sire was like behind me
because she would run with us,the coaches would run with us,
(19:52):
her son would be leading, theboys, the girls would just take
off on their own and I was inthe back half and coach would
just be behind me.
She was kind of like my littlerunning buddy for the first
couple of weeks, because I wouldstart out behind her and then I
would catch her and then I'dget past her and then I would
just keep going.
And then one practice I'llnever forget I hadn't stopped
running, and usually by the timewe get to the top of this hill
(20:15):
there at the four-way in oakridge, I would have to walk
because my legs would already bedead.
And I just kept turning acorner and hit the downhill and
got halfway down and all I hearis coach then keep going,
johnson.
I'm like I'm doing something,apparently.
Speaker 1 (20:34):
Okay, we're going to change gears a little bit.
If you were to have any job inthe world now bear in mind I
know you're a lot younger thanme, mind, I know you're a lot
younger than me, so money maynot necessarily play into it to
(20:55):
begin with what job would youlike to have?
I?
Speaker 2 (20:59):
don't know If I could do anything in the world, it
would probably be a zookeeper,because I like the big cats, I
like the exotic animals.
Speaker 1 (21:14):
That's kind of a good answer.
Speaker 2 (21:17):
That's something I could see myself doing.
Speaker 1 (21:21):
Yeah, I could see you doing that too.
Speaker 2 (21:28):
I'd just pick up about every stray cat or dog I
see anyway.
So if I got to work at a zoo,I'm sure I'd lose my mind.
I'm sure I'd be like thatlittle kid in kindergarten on
the first day, like ooh, look atthis.
Speaker 1 (21:43):
Okay, Alexis, how many dogs or cats do you own?
Speaker 2 (21:48):
Right now I own two dogs and three cats, and that
sums that
Speaker 1 (21:56):
up.
Okay, last question If you werelike omnipotent for like a
nanosecond, what would you wishfor If it were all up to you?
Speaker 2 (22:14):
Oh, I don't just stick me in an ocean somewhere,
just literally drop me off on abeach somewhere and leave me.
I would be good.
Speaker 1 (22:40):
Oh yeah, but obviously your time is not young
if you're in one of thoseprograms.
So okay, alexis, thank you verymuch.
Speaker 2 (22:52):
If I could be stuck on a beach?
Yeah, I would be stuck on abeach.
Speaker 1 (23:02):
I'm here today with Alan Williams from Outer Limits
Musulman.
Alan, why don't you take aminute to tell everybody about
your school?
Speaker 4 (23:14):
Sure, kevin.
Thank you Again.
As Kevin just iterated here, Iam a 6th Don Black Belt in
Taekwondo, a 5th Don Black Beltin Hapkido, now a Master
Instructor in Kali from thePhilippines and then also a
first brown in Judo.
Speaker 1 (23:34):
Pretty impressive.
Do you call a student you haveby the name of Alexis Johnson?
Speaker 4 (23:41):
Oh yes, of course Alexis is a memory we'll never
forget.
Speaker 1 (23:44):
She's a sweetheart and quality student forget she's
a sweetheart and qualitystudent.
Just uh say for a minute, saysomething about alexis and how
she fit into your educationalsystem alexis.
Speaker 4 (23:58):
uh, I was had the opportunity to meet after doing
a demonstration at her highschool.
Alexis at the time was only sixyears old and, ironically, now
I guess I've known her forapproximately 17 years give or
take, and Alexis begun with ussome time ago in Taekwondo and I
believe since that time hadreached her first or second dawn
(24:21):
in Taekwondo.
Speaker 1 (24:23):
Cool.
I just spoke with her the otherday Apparently family's doing
well, her family's doing well,she's doing well, everything is
good in her life and she'sactually going to school
studying nursing.
Speaker 4 (24:41):
I heard about that.
She is a workaholic besides herformer martial arts basis.
Alexis doesn't seem to slowdown and nothing seems to stop
her.
Speaker 1 (24:53):
That's true.
A few years ago, the last timeI talked to her she was in high
school and running cross country.
I was like, okay, why I had toask her why she just, you know,
thought she started out doing itin middle school, thought it
(25:15):
sounded like something, you know, she'd get outside have fun,
play with the other kids.
She didn't realize how muchwork was involved.
But when she got into it shefigured out what she had to do
and did it.
Speaker 4 (25:31):
So pretty amazing, kevin.
What she told me is how she,even if she ended up in last
place, she never stopped herdrive and the potential she
pushed was amazing because,because of your time, you worked
as a physical therapy assistant.
Speaker 1 (25:51):
Is that correct?
That was correct.
Did you know other patientswith cerebral palsy?
Speaker 4 (25:57):
Several, because I practiced for over 26 years.
So, yes, I was very acquaintedwith them.
Speaker 1 (26:04):
So how does Alexis compare to those other patients?
Speaker 4 (26:10):
To be honest, I've only seen one other patient per
se that tried to push themselveswith such an illness.
I personally can't imagine I'venever gone through something
such as these ladies have gonethrough.
But Alexis has just fought andeven though you can visibly see
some of that effect on her life,you don't see her stopping.
(26:33):
I can't imagine some of thepain she goes through or some of
the limitations she may havegone through, but I've never
seen her stop trying or pushingthrough to obtain her goals.
Well said, alexis certainly hasa personality that she is going
to do whatever needs to be doneprogram that I feel like we aim
(27:12):
to reach any individual withthat opportunity to take their
skills and help them to do whatthey can do.
But Alexis was self-driven.
Although she came to us with aneed, she took that need and
she's the one that progressedand drove herself.
Speaker 1 (27:22):
Now take a minute and address.
If a potential student wants toget in touch with you, or an
instructor, say, from anotherpart of the country, wants to
consult with you and find outhow to approach the situation
(27:44):
with a certain disability youhave experience with, how would
they get in touch with you?
What is the best way?
Speaker 4 (27:53):
Sure, obviously they're welcome to go to our
Outer Limits Martial ArtsFacebook just to kind of follow
us and see the pictures and seethe information.
But for a direct conversation Ireally encourage them to call
me directly.
My home number, or my cellnumber, as it were, is
573-579-5036.
(28:16):
They are welcome to email me orFacebook me, but I can reach
them more quickly and morereadily by calling me on my
phone or texting me.
Speaker 1 (28:25):
Okay.
Is there anything else you'dlike to say about Alexis or
about your school?
Speaker 4 (28:31):
As far as Alexis, I just continue to encourage her,
look forward to the next thingthat she's going to do.
I watch the things on societyand the world for her to show up
for that next thing, much likeyou have, Kevin, and very proud
of you and your accomplishments.
Much like you have, Kevin, andvery proud of you and your
accomplishments.
Speaker 1 (28:49):
Well, thank you.
Thank you for being with us andlook forward to talking to you
again.
Speaker 3 (29:04):
My pleasure Boy.
I really enjoyed that, Kevin, Ienjoyed listening to those
interviews.
Speaker 1 (29:10):
So our next episode is going to be about deafness.
Before we get a lot of peoplestating the obvious yes, we
realize that deaf people couldnot hear a podcast.
So this is more to educateeverybody else about deafness
(29:32):
and the deaf community,including their support groups,
which often include friends orfamily, so they can either point
out things they've learned thatthey're to the deaf community,
or perhaps give us some feedbackgive us some feedback on some
(30:00):
of our misconceptions or thingsthat we failed to point out okay
see you next time.
All right, bye.
Oh, just in case anybody needsto get a hold of us, they can do
that through our website, whichis wwwwhenlifegivesyoulemonsnet
(30:28):
.
All one word.
Yeah, I don't think you cantype it any other way.
Your browser will freak out.
Speaker 3 (30:41):
Bye now.
We are always looking toimprove the podcast, so if you
want to hear a specific topic,have a differencing opinion,
want to add something to theconversation, drop us an email.
(31:01):
Our contact information islisted on our website.
It'swwwwhenlifegivesyoulemonsnet.
We have recently added acompanion YouTube channel called
Making the Lemonade.
If you enjoy the podcast,continue your enjoyment by
joining us on YouTubeSoundstripe.
Soundstripe.
Speaker 1 (31:40):
Soundstripe, soundstripe.
Thank you,
Host
Jetheswaran Gunasekaran
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